United to End MND coalition to develop virtual research institute 

The first official meeting of the virtual institute focused on MND Research is taking place today (29 Nov) to lay down plans for the future of collaborative research into motor neuron disease (MND). 

The institute is set to bring six of the country’s leading universities and 22 other research centres already focused on developing vital treatments for MND together in a collaborative hub. With a co-ordinated approach, leading MND researchers believe the process of translational research – which takes potential treatments out of the laboratory and into clinics – can be accelerated.

MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This can cause someone to lose the ability to walk, talk, eat, drink or breathe unaided and the average life expectancy is just 18 months from diagnosis.

The creation of the institute has been prompted by the success of the United to End MND campaign led by people with MND, MND charities – the MND Association, MND Scotland and My Name’5 Doddie Foundation – and researchers, which resulted in the promise of a £50 million investment in targeted MND research over five years.

A separate £4.25 million investment from the UK Government, the charities and LifeArc – a self funding charity specialising in accelerating promising drugs to patient trials – has kickstarted the laying of foundation blocks for the institute.

At today’s meeting researchers, the charities and people with MND will discuss the next steps including ways of working together, timelines and priorities.

Rachel Maitland, MND Scotland’s Chief Executive, said: “With the virtual research institute bringing together leading MND researchers from a wealth of acclaimed organisations, today marks the start of a very promising time in MND research and we are positive that through this collaborative and co-ordinated approach, the progress of this vital research and the development of effective MND treatments will be accelerated.

“MND is a devastating disease and I would like to thank everyone involved in today’s meeting for their dedication to improving the lives of people affected by this disease. Together, we will make time count for people living with motor neuron disease.”